May 11, 2009 -- One in 10 children diagnosed with autism or autism spectrum disorders may recover, says a researcher who presented data at the recent International Society for Autism Research meeting in Chicago.
"We don't know for certain what percent of children are capable of moving off the spectrum," Deborah Fein, PhD, the study's lead author and a Board of Trustees Distinguished Professor of Psychology at the University of Connecticut, Storrs, tells WebMD. "It's probably in the neighborhood of 10% or 20%."
In her research, children who received a treatment known as applied behavioral analysis and got it early seemed to be more likely to recover.
Fein draws the one in 10 figure from her previous research and from the reported results from her ongoing study, in which she and colleagues evaluated children ages 9 to 18 ''who clearly had a diagnosis of autism or autism spectrum disorder and have moved off the spectrum.''
The researchers' report at the meeting looked at the results of three groups:
• 20 "optimal outcome" children (a phrase Fein prefers to "recovered")
• 15 children with "high functioning" autism
• 23 comparison children developing typically
"We are very carefully verifying the early diagnosis and documenting in more detail than has been done before how the kids are turning out," says Fein. While previous reports have also found that some children do move off the autism spectrum, she says most of those have been by researchers involved in a specific treatment. "That doesn't mean [the reports] are not accurate," she says.
In the research, Fein and her colleagues looked back at such measures as head circumference growth patterns, which have previously been suggested to play a role in the development of autism. They found that the rate of head growth followed by deceleration was greater in the optimal outcome and high-functioning autism groups than in the comparison group. But the head-growth patterns were not different in the optimal outcome and high-functioning groups.
They found that above average IQ may help the recovered group normalize and speculated that the above average IQ may help the recovered children to compensate.
Most of the children who recovered received early applied behavioral analysis treatment, an intensive program that aims to improve problem behaviors, Fein found. They got it at a young age, she says, typically before age 4 or 5.
But she adds this caveat: "What I really want to get across to parents here is, if a child does not have this recovery, it doesn't mean the child didn't get good care. There are clearly a minority of kids with autism who have the potential to reach this outcome."
It's long been known that children with autism tend to also have coexisting conditions such as attention problems and anxiety, and Fein also found that even in the "recovered" children, the other conditions persist.
Nearly three-quarters of the optimal outcome children still had problems such as attention deficit hyperactivity disorder, depression, or phobias. Currently, eight of the children still suffer from the problems, she reports.
Two Families' Stories
Leo Lytel was diagnosed with classic autism at age 2, recalls his mother, Jayne, who enrolled her son in Fein's study.
By the next year, the diagnosis was moved from a diagnosis of autism to PDD-NOS (pervasive developmental disorder -- not otherwise specified). "He was still on the spectrum," she tells WebMD. Leo got intensive early intervention, including behavior modification, language treatments, and speech and occupational therapy, Lytel says.
"He made remarkable progress from the very beginning," says Lytel. Leo, now 9, is one of the "optimal outcome" children in Fein's study. "He no longer meets the diagnosis for a child on the autism spectrum," his mother says. She credits the early intervention.
Karen Siff Exkorn's son Jake was also diagnosed with autism at age 2, she says. "We hired a team of therapists who literally came to our house every two hours," she tells WebMD. "My husband and I did it over the weekend. We did that for two full years,'' she says.
At age 4, Exkorn took Jake back to the developmental pediatrician. "She ran him through a battery of tests and gave me the pronouncement: 'Your son is recovered.'"
That was eight years ago. Jake, too, was one of the optimal outcome subjects in Fein's study. Today, Jake is 12, goes to sleep-away sports camp and is considered a leader by his teachers, Exkorn says.
Autism Recovery: Perspective
In response to the research findings, Geraldine Dawson, PhD, chief science officer for Autism Speaks and a research professor of psychiatry at the University of North Carolina Chapel Hill, says, "We are more hopeful than ever about the long-term outcome of children with autism. We now know that some children can actually recover from autism."
Like Fein, she cautions that the children, once recovered, are at higher risk for anxiety, attention problems, and other difficulties.
Just as Fein also suspects, Dawson says that behavioral interventions likely played a role for the optimal outcome children.
For parents whose children don't move off the spectrum, Dawson says: "It's important to remember that although all kids don't recover from autism, the majority of kids do get better when intervention is provided."
The findings about recovery, reported by many others, are credible, says another expert, Sally J. Rogers, PhD, senior scientist at the MIND Institute and professor of psychiatry and behavioral sciences at the University of California, Davis. She says the crucial study finding is that "optimal outcome children continue to have neurodevelopmental and behavioral difficulties. Even when classic symptoms of autism are reduced, other problems often persist."
For consumers, the message is not to categorize the disorders. "These disorders -- autism, ADHD, autism spectrum disorders" aren't entirely separate, Rogers says, but rather on a spectrum.
An estimate of a 10% recovery rate for those with autism seems plausible, says Martha Herbert, MD, PhD, a pediatric neurologist at Massachusetts General Hospital and Harvard Medical School, Boston. In the past, estimates of recovery have ranged from 3% to 25%. Among autism experts, she says, there is a growing consensus that recovery is possible.
"More and more people are beginning to think autism is not entirely 'hard-wired,'" Herbert tells WebMD. Herbert was a co-author on one of Fein's previously published papers, but is not a co-author on the research presented in Chicago. She serves also as director of the treatment-guided research initiative with the Autism Society of America.